Since its approval in late-March, community members have been wondering about the early experiences of patients with Tecfidera (dimethyl fumarate). On May 28th we posted an update on our Facebook page asking just this – “Many of our community members are curious to know more about Tecfidera (dimethyl fumarate-formerly BG12), the newest oral therapy for MS. Have you tried it? If so, what was your experience like?”

The response was overwhelming; over 70 community members shared their personal experiences and asked further questions. Several members already noted seeing benefits with the new treatment (“I’m currently on the regular dose of Tecfidera and I have never felt better. Hopefully my MRI in a couple months will show how much better I feel”) while others had years of experience in clinical trials (“Yes! I’ve been on the clinical trial for this drug! Still on it since 2008. No episodes and no shots. ”)

However, those who recently started treatment felt it was too early to report on efficacy, but were able to share some of the common side effects experienced in the first few weeks – including flushing and digestive issues. A majority of individuals felt the side effects were tolerable and decreased after the first few weeks (“Been on for 2 months. Stomach troubles in the first few weeks. Flushing was bearable. Symptoms have subsided completely at this point.”), while three people stopped therapy due to adverse events (low blood counts, hives, severe cramps/diarrhea, and vomiting).

A few members were waiting to start treatment pending product availability or insurance approval (“There is a large back order because so many of us waited so long for this drug”; “I have been trying to get this medicine for 3 weeks and all I do is keep fighting with my insurance company”)

Others expressed interest in trying Tecfidera in the future, but preferred to wait based on personal preference or physician recommendation (“After they said there is a chance you can get PML, I’d rather not even chance that until WAY more studies have been done! Copaxone has treated me so well and I’ve had zero problems so far! ” ; “My neurologist wants to wait on me since it is so new. So I’m still on Tysabri which I LOVE.”)

Lastly, two people expressed concerns regarding the cost of Tecfidera. Responses from the community indicate that qualifying patients may receive treatment for $10/month through the manufacturer’s assistance program.